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-   -   Where do I start (https://www.neurotalk.org/trigeminal-neuralgia/189181-start.html)

lakegirl 05-29-2013 10:11 AM

Where do I start
 
What a lovely site this is, I am so glad to have found it:)

That being said, I am hoping anyone has had the same problem I have and could offer some advice. This October I had my second to last bottom right tooth removed due to a fractured root. This had gone on for two months until I finally saw an endodontist who spotted it right away. The infection was significant. Prior to seeing the endo, my regular dentist did a rootcanal on the tooth behind it thinking that was what was causing the pain. About two months later I woke up in terrible pain in that area. Now for the last several months I have had the run around trying to figure out what is wrong with me. My regular dentist said she saw two radiofluencys which may be causing the pain and sent me back to the oral surgeon who pulled the tooth in the fall. He sent me to the endo, the endo sent me back to the oral surgeon who said he did not see anything worrisome. I've been refered to an ent and a periodontal specialist both of whom found nothing.

I didn't feel like the oral surgeon was helpful even tho he is a good doctor. I felt he did not listen to to me. The last visit I had with him I left his office in tears. He said he didn't know what was wrong with me, threw his gloves on the tray and walked out of the office. I had had a root scraping to see if that was the problem on that tooth two days previously and it was still sore. I told him this and he said he wanted to try to numb that area. I was shocked to have him give me several huge shots without first numbing the gum first! I This was after he told me I should call my doctor and have her put me on antibiotics for a month. I told him I could but she might wonder why he hadn't done it if he felt I needed them. I called back when I had calmed down and asked to be seen by another surgeon in the practice. He called me right back and told me the dental assistant was saying this or that about me after the appointment, no one can make you feel how you don't want to feel.

The endo has gone above and beyond to try to help me, even seeing me on a sunday. He finally asked the oral surgeon to go back in and look around at the radiofluencys and an appt was set up. The day before the appointment, the oral surgeons nurse cancelled the appt. I was in terrible pain and asked to keep the appt anyway. Due to the difficulty in getting an appt the dr had never seen me when it was bad. I was told the appt had already been filled.

I have seen a neurologist who said it did not seem to be trigeminal neuralgia and did not think I needed other tests. The antibiotics seem to help and that weekend having been off them for about four-five days, the pain came raging back. It felt hot and swollen in that area. Out of desperation I called the endo, he prescribed me clindamycin and pain meds. He said he would refer me to the Mayo Clinic which he did.

The oral surgeon did not want me to go there. When he found out I was going there he offered to do the procedure he previously canceled and told me a had a cyst in that area. I declined. He seemed to be twisting things and finally after receiving four phone calls from him in one day, I told him he needed to leave me alone. His office would not send my records on to the Mayo and told me I needed to sign for them. When I got to his office to do so, I was told they were in another town and another surgeon in the practice whom I had never seen had them.

I had my first appt at the mayo last week. They saw the same two things it could be but no cyst. I was taken off the antibiotics I've been on, off and on for two months to see if anything develops and I go back in two weeks. I would so appreciate any thoughts on this.

Chemar 05-29-2013 10:20 AM

Hi and welcome

May I suggest you also post in our dental forum to get additional input
Here is the link http://neurotalk.psychcentral.com/forum89.html

jjlsongbird 05-30-2013 07:53 AM

I am very sorry for all you are going through. I don't have much to offer in the way of help, but keep looking for answers and be sure the docs know the severity of your pain and take you seriously!

Vowel Lady 06-07-2013 06:08 AM

There is a chance you have atypical trigeminal neuralgia.
You should try to find a neuro who has exp. in this.
An MRI can rule out TN 1, or classic TN. But your symptoms sound more "atypical". The meds most known to help are Gabapentin and a Tricyclic AD, like Elavil or Desipramine. Heat on the area might bring a little temp. Relief. I'm so sorry...sounds hideous and the dental prof. is often clueless or WORSE when it comes to this topic!

lakegirl 06-08-2013 10:50 PM

Quote:

Originally Posted by Vowel Lady (Post 990124)
There is a chance you have atypical trigeminal neuralgia.
You should try to find a neuro who has exp. in this.
An MRI can rule out TN 1, or classic TN. But your symptoms sound more "atypical". The meds most known to help are Gabapentin and a Tricyclic AD, like Elavil or Desipramine. Heat on the area might bring a little temp. Relief. I'm so sorry...sounds hideous and the dental prof. is often clueless or WORSE when it comes to this topic!



I was at the Mayo this week. I had a ct scan, bone scan and MRI. Based on the ct scan, the radiologist concluded I didn't have findings for Trigeminal but the spot on my back lower jaw where I had the tooth pulled is still showing up. I see a neurologist this week. I could be wrong but I think the doctor's are trying to decide if I need to have surgery because the jaw bone is not healing or if I need to be treated as a nerve case. I'm in pain as I type this and hope they figure out something soon. You are right, the heating pad helps tons.


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